April 2009, Issue 13

When signs of progressive dementia began to show as short-term memory loss and the forgetting of words and names, my wife Lee still did not want anyone’s pity. As Lee then developed hallucinations and some odd changes in her behavior, the doctors gave it the new label of Lewy body disease (LBD). We researched LBD and realized we might be in for a rough ride. Little did I know that her bravery in the face of mortality would bring about such a profound change in my life.

Staff and board of the Lewy Body Dementia Association are participating in four separate scholarly events this year to promote research into Lewy body dementia. James Galvin, MD, and John Duda, MD, are presenting original abstracts based on the association's Caregiver Burden Survey. One key survey finding: on average, 50 percent of patients saw more than three doctors for more than 10 visits over the course of one year before diagnosis was made.

Teenagers spread the word for LBDA

Students ranging from 14 to 18 years old at Parkview High School in Lilburn, GA, are making a difference for thousands of Lewy body dementia (LBD) families. In January, 2009, the students began creating information packets that the Lewy Body Dementia Association (LBDA) mails to families, medical professionals and organizations. More recently, the students helped prepare a mailing to 3,000 general practitioners across the United States, with the goal of raising awareness of LBD and LBDA’s services. Thank you Parkview High School! You inspire us! Would your local school or community group like to get involved in the fight against LBD? E-mail us today.

Lyn Roche, LBDA Volunteer

With heavy hearts, we ask you to join with us in honoring and remembering Mrs. Lyn Roche. Lyn passed away suddenly on April 29, 2009.

We have come to love and look forward to Lyn Roche’s thoughtful messages to caregivers in each issue of the Lewy Body Digest eNewsletter. Even in this issue, we are grateful for Lyn's valuable contributions and unwavering support for caregivers and families. Through her work with the Lewy Body Dementia Association newsletter, the support group she co-facilitates in Sebring, Fl., with her husband, Bill, and the many books and workshops on caregiving that Lyn has made possible, she has brought hope and support to thousands of people when they needed it most.

Her strength, passion and unending love for those around her have left a lasting memory in our hearts as we mourn this devastating and sudden loss.

You Can Help!

Just $10 a month, through automated monthly giving, can help promote LBD education, awareness and research.

Learn About LBDA

Volunteer Corner

The Lewy Body Dementia Association welcomes two new Regional Volunteer Coordinators (RVCs): Cheryl Dingwell-Keckritz, RVC for Region 3 which comprises many West Coast states, and Michael Galvan, Jr., RVC for Region 2 which includes most Midwest states. (Volunteers who are not sure of their regions can find out by clicking here.)

Cheryl and Michael joined the LBDA family after loved ones were diagnosed with LBD. Please join us in welcoming them!

04/01/2009 - To families facing Lewy body dementia (LBD), it’s invaluable to hear from other people who have lived with the disease. Not only is it educational, but it can be comforting and heartening to hear how others are facing LBD’s challenges with dignity and humor.